Our IBD journey began over five years ago with our oldest daughter. It presented itself more like a thief in the night rather than a bold, coming out. For three years prior to diagnosis, there was a sense that something was not right, but the clues left were random and independent of each other. Add in a misdiagnosis and it would take someone highly skilled to assemble the clues and uncover the mystery.

Recently, I had the pleasure of sharing my story at a Learning Networks conference here in Atlanta. When you hear the term ‘learning networks’ just think ImproveCareNow, but for other chronic illness populations. This particular conference was unique because it brought four unique, budding learning networks together for the first time. The whole experience was extremely valuable, and it was amazing to see four learning networks that are at different stages, ranging from just starting out to those that have been doing it for a while. Sometimes in ImproveCareNow I find myself wishing change happened more quickly, but the experience helped remind me that we have come so far already. The purpose of my speech was to energize and inspire the participants, but I think it was me who came away inspired.

Several participants asked me to share my speech transcript so they could share with others after the conference ended. I thought maybe I could do one better and share my words with my entire ICN community. So, enjoy and I hope this reinvigorates you in our fight for better care and outcomes for young people with IBD.

Last November I wrote about a personalised health literacy application, which I developed as part of my master in Advanced Product Design, for children who recently have been diagnosed with a form of IBD. In this previous article, I explained why we should improve our health education for this target group and what the benefits could be if children become more interested in educating themselves independently about their newly diagnosed disease. This article will dive into the actual health education application, which is called Pling.

My name is Steve Woolf and I come from a family of five in Fairfax, Virginia, including a daughter in college and two 17-year-old twins, one of whom is Becky. Becky was diagnosed with Crohn’s disease at age seven, although we believe she was symptomatic before then.

As co-chair of the Patient Advisory Council (PAC) Advocacy task force, I am excited to announce our new Accommodations Toolkit! Becky and I (with lots of support from the entire PAC and ICN social workers) developed this toolkit as a resource to help patients, parents and providers better understand and navigate the accommodations process.

ImproveCareNow was recently included on a Healthline resource page to help direct people seeking help or information about Crohn’s disease.

Learning isn’t always fun but accepting that you live with a chronic disease can be downright terrifying. Whether we like it or not, we must do our best to become familiar with the ins and outs (no pun intended) of a life where IBD plays a huge role.

A few months ago, I graduated from the Umeå Institute of Design in Sweden, with a master in Advanced Product Design. For my thesis I attempted to translate my own Crohn’s disease experiences into something which could help others. I think I succeeded and would love to share the outcome of my master thesis – Pling – with everyone.

My name is Missy and I am a new member of the ImproveCareNow Board of Directors. When my son was diagnosed with Crohn’s disease in the fall of 2016, one of the handouts I received from our care team at Nemours Jacksonville was a flyer about ImproveCareNow (ICN). That night I signed up for the Parent Working Group and the ICN newsletter.

Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.